ERN-RND – Page 13 – ERN-RND | European Reference Network on Rare Neurological Diseases

14 January 2020 | ERN-RND webinar “inherited ataxias”

Continue reading “14 January 2020 | ERN-RND webinar “inherited ataxias””

New #RareDiseaseDay 2020 poster available!

Continue reading “New #RareDiseaseDay 2020 poster available!”

ERN-RND welcomes new affiliated partners

Continue reading “ERN-RND welcomes new affiliated partners”

17 December | ERN-RND webinar “non-progressive congenital ataxia”

Continue reading “17 December | ERN-RND webinar “non-progressive congenital ataxia””

New EJP RD call: Networking Support Scheme is open!

Continue reading “New EJP RD call: Networking Support Scheme is open!”

16 December | Solve-RD webinar “RD-Connect GPAP – advanced platform features”

Continue reading “16 December | Solve-RD webinar “RD-Connect GPAP – advanced platform features””

9 December | Solve-RD webinar “RD-Connect GPAP – basic analysis”

Continue reading “9 December | Solve-RD webinar “RD-Connect GPAP – basic analysis””

6 December | Journée Nationale Maladie de Huntington

Continue reading “6 December | Journée Nationale Maladie de Huntington”

“ERNs in a crucial phase of enlargement”

Continue reading ““ERNs in a crucial phase of enlargement””

ERN Newsletter is out!

Continue reading “ERN Newsletter is out!”

Euro-ataxia publishes patient charter

Continue reading “Euro-ataxia publishes patient charter”

3 December | ERN-RND webinar “Neuroacanthocytosis syndromes, a rare chorea”

Continue reading “3 December | ERN-RND webinar “Neuroacanthocytosis syndromes, a rare chorea””

27-29 November | Annual Meeting DASNE

Continue reading “27-29 November | Annual Meeting DASNE”

EAN 2020 abstract submission is open!

Continue reading “EAN 2020 abstract submission is open!”

26 November | 5th BRAIN-TEAM patient organisations day

Continue reading “26 November | 5th BRAIN-TEAM patient organisations day”

#BrainLifeGoals photo competition, submit a photograph!

Continue reading “#BrainLifeGoals photo competition, submit a photograph!”

European Conference on Rare Diseases & Orphan Products 2020, submit your poster abstract!

Continue reading “European Conference on Rare Diseases & Orphan Products 2020, submit your poster abstract!”

100 days to go until Rare Disease Day 2020!

Continue reading “100 days to go until Rare Disease Day 2020!”

SCA Global Conference registration + poster abstract submissions open!

Continue reading “SCA Global Conference registration + poster abstract submissions open!”

14-16 November | International Ataxia Research Conference (IARC) 2019

Continue reading “14-16 November | International Ataxia Research Conference (IARC) 2019”

5 November | ERN-RND webinar “Clinical Features of Ataxia”

Continue reading “5 November | ERN-RND webinar “Clinical Features of Ataxia””

29-30 October | Organising & maximizing rare disease biological sample data in biobanks

Continue reading “29-30 October | Organising & maximizing rare disease biological sample data in biobanks”

23-25 October | Training course: Quality assurance, variant interpretation and data management in the NGS diagnostics era

Continue reading “23-25 October | Training course: Quality assurance, variant interpretation and data management in the NGS diagnostics era”

24 October | WEBINAR: “CPMS upcoming changes”

Continue reading “24 October | WEBINAR: “CPMS upcoming changes””

24 October | WEBINAR: “Diagnostic imaging in NMD: the basics”

Continue reading “24 October | WEBINAR: “Diagnostic imaging in NMD: the basics””

3-4 October | 8th Annual Symposium on ATP1A3 in Disease

Continue reading “3-4 October | 8th Annual Symposium on ATP1A3 in Disease”

3 October | World MSA Day

Continue reading “3 October | World MSA Day”

Dystonia Awareness Month | September 2019

Continue reading “Dystonia Awareness Month | September 2019”

30 September | EU Health Programme High Level Conference

Continue reading “30 September | EU Health Programme High Level Conference”

Call to apply to join an ERN is open until 30 November 2019

Continue reading “Call to apply to join an ERN is open until 30 November 2019”

Interview: “de neuroloog” with Holm Graessner about the neurological ERNs
March 6, 2025
What do centres of expertise gain from participating in an ERN?Graessner: An immediate advantage is when doctors at such a …read more »
MEP Meeting on Brain Health and Neurological Conditions
February 19, 2025
“Does current policy meet the needs of the rare neurology community” and “The impact of rare neurological conditions, through the …read more »
Solve-RD: Interview with coordinator Holm Graessner
February 12, 2025
Within the Solve-RD project, over 300 experts from different European countries and Canada re-analysed genome data from undiagnosed 6447 patients. …read more »

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Rare Disease Clinical Trial Network @rarediseasectn.bsky.social 15 hours

🧠 Rare Neurological Disease Registry 🧠

In celebration of #BrainAwarenessWeek, we’re highlighting Prof Sinéad Murphy (Tallaght University Hospital, Trinity College Dublin) who#BrainAwarenessWeek,RND registry. #RareNeurologicalDisease

📅 Register here: #RareNeurologicalDiseaseff=oddtdtcreator">www.eventbrite.ie/e/...
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ERN-RND @ern-rnd.bsky.social 4 days

Interested in #HuntingtonsDisease and #Chorea? Join our free #webinar on March 18 at 3 pm CET with Jean-Marc Burgunder! Register now: t1p.de/1lk3h
t1p.de/1lk3h
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ERN-RND @ern-rnd.bsky.social 4 days

Register for our WinterSchool with Bernhard Landwehrmeyer, who will be talking about Disease-Modifying Treatment Approaches/Trials in Huntington's Disease on March 12. In collaboration with the European Paediatric Neurology Society. Registration: https://t1p.de/eajix, Programme: https://t1p.de/jrxm9
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ERN-RND @ern-rnd.bsky.social 5 days

💻 Upcoming #webinar on “Psychiatric and Neuropsychological Assessments in Huntington’s Disease”
📅 1st April, 3:00 CEST
🗣️ Mayke Oosterloo, Maastricht University Medical Center, Netherlands
Sign up 👉 https://t1p.de/qtbc9
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ERN-RND @ern-rnd.bsky.social 5 days

Join our free #WinterSchool with Gabriella Paparella, who will be talking about the Treatment of #Ataxia - Rahabilitation based. In collaboration with the European Paediatric Neurology Society. Register now: https://t1p.de/eajix, Programme: https://t1p.de/jrxm9